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Research Papers

Community-based study of health-related quality of life in spinal cord injury, muscular dystrophy, multiple sclerosis, and cerebral palsy

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Pages 1284-1290 | Received 12 Apr 2011, Accepted 14 Nov 2011, Published online: 12 Feb 2012

References

  • Acquadro C, Berzon R, Dubois D, Leidy NK, Marquis P, Revicki D, Rothman M; PRO Harmonization Group. Incorporating the patient’s perspective into drug development and communication: an ad hoc task force report of the Patient-Reported Outcomes (PRO) Harmonization Group meeting at the Food and Drug Administration, February 16, 2001. Value Health 2003;6:522–531.
  • Ackerley SJ, Gordon HJ, Elston AF, Crawford LM, McPherson KM. Assessment of quality of life and participation within an outpatient rehabilitation setting. Disabil Rehabil 2009;31:906–913.
  • Brown I, Brown R. Quality of life and disability. an approach for community practitioners. London & New York: Jessica Kingsley Publishers; 2003.
  • Jahnsen R, Villien L, Aamodt G, Stanghelle JK, Holm I. Health-related quality of life in adults with cerebral palsy compared to the general population. Dev Med Child Neurol 2005;47:29.
  • Vaz Serra A, Canavarro MC, Simo˜es MR, et al. Estudos psicométricos do instrument de avaliac¸a˜o da Qualidade de Vida da Organizac¸a˜o Mundial de Saúde (WHOQOL-Bref) para Portugue’s de Portugal. Psiquiatria Clınica 2006;27:41–49.
  • Tarsuslu T, Livanelioglu A. Relationship between quality of life and functional status of young adults and adults with cerebral palsy. Disabil Rehabil 2010;32:1658–1665.
  • Gaskin CJ, Morris T. Physical activity, health-related quality of life, and psychosocial functioning of adults with cerebral palsy. J Phys Act Health 2008;5:146–157.
  • Nätterlund B, Ahlström G. Activities of daily living and quality of life in persons with muscular dystrophy. J Rehabil Med 2001;33:206–211.
  • Nätterlund B, Gunnarsson LG, Ahlström G. Disability, coping and quality of life in individuals with muscular dystrophy: a prospective study over five years. Disabil Rehabil 2000;22:776–785.
  • Rahbek J, Werge B, Madsen A, Marquardt J, Steffensen BF, Jeppesen J. Adult life with Duchenne muscular dystrophy: observations among an emerging and unforeseen patient population. Pediatr Rehabil 2005;8:17–28.
  • Boström K, Ahlström G. Quality of life in patients with muscular dystrophy and their next of kin. Int J Rehabil Res 2005;28:103–109.
  • Grootenhuis MA, de Boone J, van der Kooi AJ. Living with muscular dystrophy: health related quality of life consequences for children and adults. Health Qual Life Outcomes 2007;5:31.
  • Antonini G, Soscia F, Giubilei F, De Carolis A, Gragnani F, Morino S, Ruberto A, Tatarelli R. Health-related quality of life in myotonic dystrophy type 1 and its relationship with cognitive and emotional functioning. J Rehabil Med 2006;38:181–185.
  • Hammell WK. Quality of life after spinal cord injury: a meta-synthesis of qualitative findings. Spinal Cord 2007;45:124–139.
  • Mitchell AJ, Benito-León J, González JM, Rivera-Navarro J. Quality of life and its assessment in multiple sclerosis: integrating physical and psychological components of wellbeing. Lancet Neurol 2005;4:556–566.
  • Rudick RA, Miller DM. Health-related quality of life in multiple sclerosis: current evidence, measurement and effects of disease severity and treatment. CNS Drugs 2008;22:827–839.
  • Miller DM, Allen R. Quality of life in multiple sclerosis: determinants, measurement, and use in clinical practice. Curr Neurol Neurosci Rep 2010;10:397–406.
  • Peric’ S, Rakocevic-Stojanovic V, Stevic Z, Basta I, Pavlovic S, Vujanac V, Marjanovic L, Lavrnic D. Health-related quality of life in patients with myotonic dystrophy type 1 and amyotrophic lateral sclerosis. Acta Neurol Belg 2010;110:71–77.
  • Salter KL, Moses MB, Foley NC, Teasell RW. Health-related quality of life after stroke: what are we measuring? Int J Rehabil Res 2008;31:111–117.
  • Taphoorn MJ, Sizoo EM, Bottomley A. Review on quality of life issues in patients with primary brain tumors. Oncologist 2010;15:618–626.
  • von Steinbuechel N, Richter S, Morawetz C, Riemsma R. Assessment of subjective health and health-related quality of life in persons with acquired or degenerative brain injury. Curr Opin Neurol 2005;18:681–691.
  • Jovanović M. Kvalitet života osoba sa invaliditetom u Srbiji (Quality of life in persons with disability in Serbia) [dissertation]. Belgrade (Serbia): University of Belgrade; 2011 p 201 Available from: Faculty of political sciences, Belgrade.
  • Faul F, Erdfelder E, Lang AG, Buchner A. G*Power 3: a flexible statistical power analysis program for the social, behavioral, and biomedical sciences. Behav Res Methods 2007;39:175–191.
  • The WHOQOL Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol Med 1998;28:551–555.
  • The WHOQOL Group. (1998). WHOQOL User manual. Geneva: WHO.
  • Power MJ, Green AM; WHOQOL-Dis Group. Development of the WHOQOL disabilities module. Qual Life Res 2010;19:571–584.
  • van der Slot WM, Nieuwenhuijsen C, van den Berg-Emons RJ, Wensink-Boonstra AE, Stam HJ, Roebroeck ME; Transition Research Group South West Netherlands. Participation and health-related quality of life in adults with spastic bilateral cerebral palsy and the role of self-efficacy. J Rehabil Med 2010;42:528–535.
  • Padua L, Aprile I, Frusciante R, Iannaccone E, Rossi M, Renna R, Messina S, et al. Quality of life and pain in patients with facioscapulohumeral muscular dystrophy. Muscle Nerve 2009;40: 200–205.
  • Kohler M, Clarenbach CF, Böni L, Brack T, Russi EW, Bloch KE. Quality of life, physical disability, and respiratory impairment in Duchenne muscular dystrophy. Am J Respir Crit Care Med 2005;172:1032–1036.
  • Blanes L, Carmagnani MI, Ferreira LM. Quality of life and self-esteem of persons with paraplegia living in São Paulo, Brazil. Qual Life Res 2009;18:15–21.
  • Ku JH. Health-related quality of life in patients with spinal cord injury: review of the short form 36-health questionnaire survey. Yonsei Med J 2007;48:360–370.
  • da Silva Bampi LN, Guilhem D, Lima DD. Qualidade de vida em pessoas com lesão medular traumática: um estudo com o WHOQOL-BREF. Rev Bras Epidemiol 2008;11:67–77.
  • Canadian Burden of Illness Study Group. Burden of illness of multiple sclerosis: part II. Quality of life. Can J Neurol Sci 1998;25:31–38.
  • Nortvedt MW, Riise T, Myhr KM, Nyland HI. Quality of life in multiple sclerosis: measuring the disease effects more broadly. Neurology 1999;53:1098–1103.
  • Aymerich M, Guillamón I, Jovell AJ. Health-related quality of life assessment in people with multiple sclerosis and their family caregivers. A multicenter study in Catalonia (Southern Europe). Patient Prefer Adherence 2009;3:311–321.
  • Tanriverdi D, Okanli A, Sezgin S, Ekinci M. Quality of life in patients with multiple sclerosis in Turkey: relationship to depression and fatigue. J Neurosci Nurs 2010;42:267–273.
  • Alshubaili AF, Awadalla AW, Ohaeri JU, Mabrouk AA. Relationship of depression, disability, and family caregiver attitudes to the quality of life of Kuwaiti persons with multiple sclerosis: a controlled study. BMC Neurol 2007;7:31.
  • Drulovic J, Pekmezovic T, Matejic B, Mesaros S, Manigoda M, Dujmovic I, Stojsavljevic N, et al. Quality of life in patients with multiple sclerosis in Serbia. Acta Neurol Scand 2007;115:147–152.

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